8 things I wish I’d known when I became a special needs parent

By Kelly Wilton

There are many things I look back on and wish that I knew then what I know now. It would have helped with the turbulent array of emotions I went through in those early years of parenting. 

My partner in crime and I weathered some pretty major storms with our premature twins in the early days and we continue to do so on a daily basis. However, we are in a better position now and we are probably the most solid we have been in a while.

We managed to get through the early years of sleepless nights and countless hospital stays; now, we are dealing with disability, illness and development delays.

Doctors don’t always paint a great picture when your child receives a rare disease diagnosis; information is often scarce because of lack of research and low patient numbers and by definition the community of other parents is small and spread out across the globe. It can be hard to find the information and support you need to navigate this new world you’ve been introduced to.

So if I could turn back time and talk to myself at the beginning of my son’s diagnosis, give myself some much needed advice, what would I say?

1. Despite the maelstrom you are now in, it will settle in some way. Take one day at a time. You will find a new, regular way of life soon enough however life as you once knew it has changed.  

2. You will see your partner/significant other in a whole new light. It will make you stronger as a couple and even at your darkest points, something will happen and you’ll pick each other up. Even when one of you wants to leave you’ll be able to dig deep and keep going.  

3. Not everyone wants to ‘get it’. Some people will never understand nor show empathy towards your changing family situation. Unfortunately, not everyone has the capacity to understand and accept change. You will though, because to keep moving forward, you will have to. These other people will be left behind, and you know what? That’s ok and after a while you’ll realise they weren’t supposed to be along for the ride!  

4. You will now have the space in your life to make wonderful new friends who share your vision and experience of your changing family landscape.   

5. You will adapt to this new way of life over time. You will go through the roller-coaster of emotions of grief; you have lost a way of life that you had envisioned and you are now getting used to your new reality.  Grief may hit you at odd times, sit with it.

6. Take all the time you need to grieve. Ignore the comments from others may not realise that by saying ‘you should be grateful because it could be a whole lot worse’ is actually a shitty thing to say.  Because, well, it is a whole lot worse at the moment, because your life has changed, as has your child’s, and that is what you are adapting to.  

7. You will celebrate again! The small milestones will be huge and take it from me, shout from the roof tops because it’s worth celebrating!  

8. Your child will help you understand the term unconditional love. People throw that term around like it’s confetti. But until you live it, it’s just words. 

Follow more of Kelly & Mikey Danger’s journey at www.lovingdanger.org.   Their patient page for HHE Families can be found at: http://www.rareconnect.org/en